Receipt of Hospice Aide Visits Among Medicare Beneficiaries Receiving Home Hospice Care

Abstract

Context:

Hospice aides provide essential direct care to hospice patients, yet there is minimal research examining hospice aide visits.

Objectives:

describe the prevalence and frequency of hospice aide visits, and 2) evaluate patient, community, and hospice characteristics associated with these visits.

Methods:

Longitudinal cohort study of Medicare Current Beneficiary Survey (MCBS) participants who died between 2010-2018 and received routine hospice care in the 6 months prior to death (n=674). We characterized prevalence and frequency of hospice aide visits over time and used generalized linear modelling to identify factors associated with visits.

Results:

64% of hospice enrollees received hospice aide visits and average visit frequency (1.3 per week) remained stable throughout enrollment. The only patient characteristic associated with receipt of hospice aide visits was primary hospice diagnosis (respiratory diagnosis vs. dementia: OR 0.372, p=0.040). Those living in community-based residential housing and those cared for by hospices with aides employed as staff were more likely to receive any hospice aide visits (OR 2.331, p=0.047 and OR 4.612, p=0.002, respectively.)

Conclusion:

Hospice aide visits are a common component of hospice care, but visit frequency does not increase as death approaches. Receipt of hospice aide visits was primarily associated with community and hospice agency (rather than patient) characteristics. Future work is needed to ensure that hospice aides are integrated in the hospice interdisciplinary team and that access to hospice aide visits is meaningfully driven by patient and family needs, rather than the practice norms and business models of individual hospice agencies.

Introduction

Hospice care supports a large and growing number individuals at the end of life. An estimated 1.55 million Medicare beneficiaries received hospice care in 2018, up nearly 15% from just 4 years prior.¹ Fundamental to hospice is interdisciplinary support of both patients and their caregiving families, who provide the bulk of direct care to individuals at the end of life.^2-4 Hospice is provided by an interdisciplinary team, which may include doctors, nurses, social workers, chaplains, hospice aides, volunteers, and others.

The role of hospice aides in the care of an individual patient is determined by the interdisciplinary team and described in the plan of care; the care they provide must be consistent with their training and supervised by the hospice nurse.⁵ Although functional and personal care tasks (e.g., bathing, transferring) are often the hospice aide’s primary role, hospice aides are also required to report changes in the patient’s medical, nursing, rehabilitative, and social needs to the hospice nurse.⁵ In addition to directly benefiting individuals at the end of life, support from hospice aides can also benefit their family caregivers by reducing some of their personal care responsibility and facilitating communication with the hospice interdisciplinary team.^6-10

Support by hospice aides may be particularly critical in the last weeks of life, when underlying diseases progress and symptom burden grows. Commensurate with greater care needs, utilization of services within hospice such as nursing visits and continuous hospice care have been shown to increase as death approaches.^11,12 At the same time, function and self-care decline precipitously as death approaches and often result in the need for near-total care, which may place significant burdens on family caregivers.^13-15

Despite the essential care they provide, basic information about hospice aide care (e.g., frequency and timing of hospice aide visits) is not available. The role of hospice aides in the hospice interdisciplinary team is rarely described and much of the existing literature describing hospice interdisciplinary team communication does not include hospice aides.^{9, 16} Though research has revealed variation in services delivered by hospice based on geography and characteristics of hospice agencies themselves (e.g., ownership, staffing structure) ^17-20 factors associated with receipt of hospice aide care are unknown.

In this study, we use a nationally representative sample of decedents who received hospice care at home in order to describe the prevalence and frequency of hospice aide visits throughout the hospice enrollment period and evaluate patient, community, and hospice characteristics associated with receipt of hospice aide visits. We hypothesized that like other hospice services, hospice aide visits would increase as death approached and that functional need would be associated with hospice aide visits. This foundational information about hospice aide visits is needed in order to maximize the potentially positive impact of hospice aides on end of life care.

Methods

Study Design and Sample

We conducted a longitudinal cohort study of Medicare beneficiaries enrolled in the Medicare Current Beneficiary Survey (MCBS) who died between 2010-2018. MCBS is a continuous, multipurpose survey conducted by the Centers for Medicare and Medicaid Services that uses a rotating panel design to create a sample that is representative of the Medicare population in total and within age groups in order. Its primary goals are to determine expenditures and sources of payment for all healthcare services used by Medicare beneficiaries and to track outcomes over time.²¹ Our analyses exclude survey results from 2014, which are not publicly available. Each sampled beneficiary is interviewed in person up to three times per year over a four-year period. MCBS data are linked to Medicare claims data via ID numbers provided by MCBS and can provide a detailed examination of beneficiary characteristics and health status. The MCBS-Medicare linkage also allows for evaluation of both services received over time and the providers of those services.

Of the 4,115 decedents included in MCBS between 2010-2018, 3,953 had available and complete claims data in the 6 months prior to death; 2,013 of those received hospice care in the 6 months prior to death (n=2,013). In order to assess hospice aide visits during a period when hospice enrollees were continuously eligible for such care, those with continuous, inpatient, or respite hospice care were excluded (n=650) as well as those who had any periods of disenrollment from (n=163). Because personal care services already available in the nursing home setting likely impact the receipt of hospice aide visits, those who reported residing in a nursing home at any time in the 6 months prior to death (n=480) were also excluded. Finally, those with missing data for model components (N=46) were excluded. This resulted in a final sample of n=674. This sample reflects a population of Medicare decedents who received typical, in-home hospice care at the end of life. As described below, a subset of analyses were conducted with the only those individuals enrolled in hospice for longer than 1 week (n= 450).

Measures

Hospice Services Received

Hospice claims include revenue codes indicating the types of services provided per claim. Codes for hospice services include routine home care, continuous home care, inpatient care, respite care, physician services and other hospice care. Additional codes capture charges for nursing, social services, and home health aides (including data on general classification, visit charge, hourly charge, other charge). Our analysis focused on the prevalence of days with visit charges for each service type and on the proportion of hospice days that each service type occurred.

Patient Characteristics

Sociodemographic characteristics included age, race/ethnicity (White, Black, Hispanic, or Other), gender, education less than high school, marital status, and Medicaid coverage. Functional and clinical characteristics included number of activities of daily living (ADLs) where assistance was required (activities considered were walking, feeding, dressing, toileting, bathing, and transferring), number of comorbidities (comorbidities considered were dementia, heart disease, lung disease, stroke, diabetes, cancer, arrhythmia, CHD, hypertension, Parkinson’s, arthritis, depression, osteoporosis, or hip fracture), and primary hospice diagnosis (dementia, neoplasm, circulatory, respiratory, or other). We also evaluated the length of hospice enrollment.

Primary hospice diagnosis and length of hospice enrollment were obtained from Medicare claims data. Length of hospice enrollment is the number of days from the first hospice claim to the date of death. For our measure of dementia, we used an inclusive case definition developed for use with the MCBS data.²² All other measures are drawn from self or proxy-reported responses to the MCBS survey at the last MCBS interview date prior to death or the after-death proxy interview.

Community Characteristics

We measured factors related to the community (i.e., living arrangement, geography) in which the decedent received care. This included living alone, living in community-based residential housing (settings that provide services in a home-like setting, e.g., assisted living facilities, retirement communities),^{23, 24} living in a metropolitan area, and region of residence (Northeast, Midwest, South, or West). All measures are drawn from self or proxy-reported responses to the MCBS survey at the last MCBS interview date prior to death or the after-death proxy interview.

Hospice Characteristics

We used data from the Medicare Provider of Services file linked to Medicare hospice claims using the provider number to identify hospice agency characteristics including ownership (non-profit, for-profit, government), affiliation (hospital, home health agency, freestanding), and if hospice aides were employed as hospice staff rather than contractors.²⁵

Analysis

We used descriptive statistics to characterize hospice aide use over time (e.g., receipt of any hospice aide visits, proportion of days per week with hospice aide visits) and to characterize decedents based on receipt of hospice aide visits.

In order to understand if different factors were associated with different aspects of hospice aide use, we then used generalized linear modelling to determine factors associated with 1) receipt of any hospice aide service (binomial, logit link), and 2) the proportion of days per week with hospice visits (binomial, fractional). Because those enrolled in hospice less than one week are likely to be actively dying and may not be in hospice for long enough to have a full interdisciplinary care plan enacted,²⁶ we limited both of these analyses to those enrolled in hospice for longer than 1 week (n= 450). The models included sociodemographic variables, patient clinical and functional measures, and community and hospice characteristics.

All analyses take into account the sample weights and survey design variables available in MCBS. Data analysis was conducted using Stata 16.1 (StataCorp. 2019. Stata Statistical Software: Release 16. College Station, TX: StataCorp LLC.) The project was determined to be exempt by the Icahn School of Medicine at Mount Sinai IRB.

Results

Prevalence of Hospice Aide Visits

Of the estimated 2.75 million Medicare decedents who used routine home hospice care between 2010-2018, 64% (approximately 1.75 million individuals) received any hospice aide visits during their hospice enrollment (Table 1).

Table 1:

Characteristics of Decedents by Receipt of Any Hospice Aide Visits

	Full Sample	No Hospice Aide Visits	Hospice Aide Visits	p-value
Sample N,	674	235	439
Sample N, weighted	2,753,898	1,001,519	1,752,379
Sample %, weighted	100%	36%	64%
Patient Characteristics: Sociodemographic
Age, mean (SD)	82.5 (9.4)	81.3 (10.1)	83.2 (8.9)	0.079
Race/ ethnicity				0.333
White, %	81.2	85.4	78.8
Black, %	6.4	4.3	7.6
Hispanic, %	5.8	4.8	6.4
Other, %	6.6	5.6	7.2
Female	51.5	48.1	53.4	0.135
Education less than high school, %	27.0	27.4	26.7	0.865
Married, %	41.3	43.1	40.3	0.511
Medicaid, %	15.9	16.7	15.4	0.723
Patient Characteristics: Functional and Clinical
Number ADLs needing help, mean (SD)a	4.0 (2.5)	3.7 (2.6)	4.2 (2.5)	0.026
Number of comorbidities, mean (SD)	5.0 (2.3)	4.9 (2.4)	5.1 (2.3)	0.264
Primary Hospice Diagnosis				0.021
Dementia, %	14.3	9.9	16.8
Neoplasm, %	38.8	45.2	35.1
Circulatory, %	22.5	21.9	22.8
Respiratory, %	10.3	11.8	9.4
Other, %	14.2	11.2	15.9
Community Characteristics
Lives alone, %	24.9	23.6	25.6	0.637
Community-based Residential Housing, %	21.3	17.6	23.5	0.153
Lives in Metropolitan Area, %	77.5	76.9	77.8	0.835
Region				0.195
Northeast	15.0	19.1	12.7
Midwest	27.5	25.2	28.8
South	39.0	35.9	40.8
West	18.5	19.8	17.7
Hospice Characteristics
Hospice Ownership				0.028
Non-profit	47.1	54.9	42.6
For-profit	41.2	35.8	44.3
Government	11.7	9.3	13.12
Hospice Affiliation				0.039
Hospital Affiliated	9.7	13.7	7.3
Home-health Agency Affiliated	13.4	13.8	13.2
Freestanding	76.9	72.5	79.5
Hospice aides are hospice staff	91.8	86.1	95.1	0.001

^aADLs considered: walking, feeding, dressing, toileting, bathing, transferring

Receipt of hospice aide visits differed by length of hospice enrollment and those with any hospice aide visits had longer lengths of hospice enrollment (mean enrollment 68.6 days versus 34.9 days, p<0.001 in those with any versus no hospice aide visits). A closer examination of length of hospice enrollment revealed that short hospice enrollment (0-1 weeks) was common (34% of study participants representing 936,132 individuals) (Figure 1). Receipt of any hospice aide visits was significantly less common among those enrolled in hospice 1 week or less (37.5% of those enrolled in hospice 0-1 weeks with any hospice aide visits versus 82.3%, 76.3%, 73.0%. 71.8%, and 83.7% in those enrolled in hospice 1-2, 3-4, 5-12, 13-24, and 24+ weeks respectively, p<0.001). However, differences between the percentage receiving any hospice aide visits in enrollment categories beyond 1 week were minimal.

Figure 1:

Number of Decedents With and Without Hospice Aide Visits by Length of Hospice Enrollment

Table 1 characterizes our sample and presents additional differences between decedents who did and did not receive hospice aide visits (Table 1). Significant differences in primary hospice diagnosis existed between those who received any hospice aide visits and those who did not (p=0.021); most notably, those who received any hospice aide visits were more likely to have dementia (16.8% versus 9.9%) and less likely to have a neoplasm (35.1% vs. 45.2%) as compared to those who did not receive hospice aide visits. In addition, those who received hospice aide visits needed help with a greater number of ADLs (4.2 versus 3.7, p=0.026). Receipt of hospice aide visits varied by hospice ownership (p=0.028) and hospice affiliation (p=0.039). As compared to those with no hospice aide visits, those who received any hospice aide visits were more likely to be cared for by a for-profit hospice (44.3% versus 35.8%) and less likely to be cared for by a hospital-affiliated hospice (7.3% vs. 13.7%) Those cared for by hospices that employed hospice aides as staff were also more likely to receive hospice aides (95.1% vs 86.1%, p=0.001).

Frequency of Hospice Aide Visits

On average, decedents in our sample received hospice aide visits 1.3 times per week during hospice enrollment. Among those who received hospice aide care, hospice aide visits occurred on average 2.2 days per week. The proportion of days/week with hospice aide visits for the sample remained stable over the duration of hospice enrollment. The number of days/week with hospice aide visits was roughly similar to the number of days/week with nursing visits for much of the hospice enrollment period, but nursing visit frequency increased during the last month of life and in the last week of life there were on average more than twice as many nursing visits as compared to hospice aide visits. On average, hospice aide visits were more than 3 times as common as hospice social worker visits (Figure 2).

Figure 2:

Average Days/Week with Hospice Aide, Nurse, and Social Service Visits During Each Week of Hospice Enrollment

Examination of the average number of days/week with a hospice aide visit by length of hospice enrollment revealed that those in the longer enrollment groups tended to receive more hospice aide visits per week. Decedents who enrolled in hospice 0-7 days prior to death had less than 1 hospice aide visit compared to 1.5 to 2.0 visits reported for those enrolled more than a week (p<0.001). However, statistical differences were not detected for enrollment groups more than week prior to death (Figure 3).

Figure 3:

Average Days/Week with Hospice Aide Visits During Each Week of Hospice Enrollment by Length of Enrollment

Factors Associated with Hospice Aide Visits

Factors Associated with Any Hospice Aide Visit

In multivariable models of those enrolled in hospice at least one week (n=450), the only patient characteristic associated with any hospice aide visit was primary hospice diagnosis: those with a respiratory diagnosis (vs. dementia) were less likely to receive any hospice aide visits (OR 0.372, p=0.040). In addition, those living in community-based residential housing were more likely to receive any hospice aide visits (OR 2.331, p=0.047). Finally, those cared for by hospices that employed hospice aides as staff members were more likely to receive any hospice aide visits (OR 4.612, p=0.002) as compared to hospices that employed contracted hospice aides (Table 2).

Table 2:

Factors Associated with Any Hospice Aide Visit or More Hospice Aide Visits per Week Among Those Enrolled in Hospice At Least One Week (n=450)

Variable	Any Hospice Aide Visits		More Hospice Aide Visits per Week
	Odds Ratio	p-value	Coefficient	p-value
Patient Characteristics: Sociodemographic
Age	1.009	0.669	1.002	0.779
Race/ Ethnicity (vs. White)
Black	0.976	0.968	1.135	0.585
Hispanic	1.531	0.489	1.317	0.150
Other	1.317	0.659	1.228	0.323
Female	0.881	0.653	1.041	0.744
Patient Characteristics: Functional and Clinical
Primary Hospice Diagnosis (vs. Dementia)
Neoplasm	0.512	0.100	0.824	0.254
Circulatory	0.571	0.187	0.845	0.318
Respiratory	0.372	0.040	0.756	0.176
Other dx	1.125	0.792	0.832	0.338
Number Comorbidities	1.039	0.556	1.018	0.511
Number of ADLs with difficulty	1.031	0.622	1.041	0.160
Length of Hospice Enrollment (vs. 8-14 days)
3-4 weeks	0.730	0.478	0.825	0.286
5-12 weeks	0.684	0.258	0.907	0.515
13-24 weeks	0.559	0.096	0.963	0.856
24+ weeks	0.905	0.814	1.066	0.676
Community Characteristics
Lives alone	1.044	0.899	1.096	0.440
Lives in Metropolitan Area	1.508	0.211	1.164	0.295
Region (vs. Northeast)
Midwest	0.949	0.891	0.615	0.002
South	0.800	0.567	0.653	0.014
West	1.127	0.834	0.532	0.000
Community-based Residential Housing	2.331	0.047	1.425	0.005
Hospice Characteristics
Hospice Ownership (vs. Nonprofit)
For Profit	1.248	0.428	1.389	0.005
Government	2.300	0.125	1.202	0.246
Hospice Affiliation (vs. Freestanding)
Hospital	0.791	0.590	0.813	0.474
Home Health Agency	1.169	0.690	0.980	0.865
Hospice aides are hospice staff	4.612	0.002	1.302	0.433

Factors Associated with More Hospice Aide Visits per Week

While patient characteristics were not associated with receiving more hospice aide visits per week among those enrolled in hospice at least one week (n=450), several community and hospice characteristics were associated with more hospice aide visits per week. Those living outside the Northeast had a significantly lower number of days/week with hospice aide visits (coeff 0.615, p=0.002; coeff 0.653, p=0.014; coeff 0.532, p<0.001 in the Midwest, South, and West vs Northeast respectively). Those living in community-based residential housing had more hospice aide visits per week (coeff 1.425, p=0.005) as compared to those who did not. Finally, those cared for by for-profit hospices as compared to non-profit hospices received significantly more hospice aide visits per week (coeff 1.389, p=0.005) (Table 2).

Discussion

In this nationally representative sample of decedents receiving routine home hospice care in the 6 months prior to death, approximately two-thirds received hospice aide visits during hospice enrollment and the number of hospice aide visits per week remained stable throughout hospice enrollment. Other than having a primary hospice diagnosis of dementia, patient clinical and demographic characteristics (e.g., age, marital status, functional impairment, comorbidities) were not associated with receipt of hospice aide visits in multivariable models. To our knowledge, this is the first study to examine how hospice aide care is delivered nationally and our findings suggest ways that hospice aides could be better utilized to support patients and families at the end of life.

The high prevalence of hospice aide visits suggest that hospice aides are a common part of hospice care for the majority of hospice enrollees: hospice aides visit patients as frequently as hospice nurses and more often than hospice social workers. Yet the Code of Federal Regulations, which governs the structure of hospice interdisciplinary teams, considers hospice aides as “non-core” hospice providers who are not required to play a role in the development of the hospice care plan.⁵ Given their prominent role in the care of patients and families, consideration should be given to including hospice aides as “core” hospice team providers. This inclusion may help overcome existing power dynamics within the healthcare team that undervalue direct care worker contributions^27-29 and also ensure that hospice aides contribute their unique perspective on patient and family care needs at the end of life to the hospice care plan.⁷ When paired with appropriate financial compensation, formal inclusion of hospice aides within the interdisciplinary team may have the added benefit of improving the quality of hospice aide jobs and therefore aiding in the recruitment and retention of this essential workforce.^{28, 29}

However, the frequency and patterns of hospice aide visits raises concerns about how hospices support the non-medical needs of patients and families and whether aides are being appropriately resourced. We hypothesized that the frequency of hospice aide visits would increase as death approached when disease severity and functional impairments worsened and need for aide care was the greatest.³⁰ Yet we found that the frequency of visits remained stable at 1.3 visits per week throughout hospice enrollment. Notably, this pattern was true for all hospice enrollment lengths beyond two weeks (2 weeks to over 24 weeks). The failure to increase hospice aide staffing as death approaches not only indicates that hospice aides are not routinely assisting families with increasing personal care responsibilities during this difficult time, but there may be a missed opportunity for better care quality. Hospice aides not only provide hands-on support, but can also serve as the “eyes and ears” of the hospice team by sharing their unique insights into the support that patients and families need with all members of the interdisciplinary team as death approaches.⁹

Our evaluation of patient, community, and hospice characteristics associated with receipt of hospice aide visits suggests that rather than aligning with the characteristics and needs of individual patients, receipt of hospice aide visits was instead most associated with factors related to the community and the hospice itself. While the specific characteristics associated any hospice aide visits and frequency of hospice aide visits vary slightly, taken together these results are consistent with the existing literature describing how regional differences and profit status impact access to and content of hospice care.^{18, 20, 31} Of note, prior work has consistently shown that for-profit hospices provide narrower ranges of services, use less skilled clinical staff, and have higher rates of complaint allegations and deficiencies, as compared to non-profit hospices.^{18, 32, 33} Whereas our finding of increased frequency of hospice aides by for-profit hospices may appear to align with higher quality care when viewed in isolation, evidence suggests that for-profit hospices may instead be substituting hospice aides for other professional, higher-cost staff.²⁰ Future work should explore how hospice aide visits align with overall hospice cost considerations.

Because current regulations only require that hospice aide care be aligned with the interdisciplinary team’s plan of care, additional research is needed to understand how decisions to include hospice aides in the plan of care are actually made and under what circumstances hospice aide involvement benefits patients and their families. This may be particularly important in settings like assisted living facilities, both where services like personal care and nursing support may already be available,^{23, 24} but where our findings suggest that hospice aide visits are both more common and more frequent. Given known and anticipated workforce shortages, such inquiry should also consider the broader community availability of direct care workers like hospice aides.²⁹ This will help to create systems that enable hospice aide visits, like nursing or social work visits, to be responsive to the changing needs of patients and families and contribute to improved overall care.

There are several potential limitations to our study. First, data about presence of family caregivers in the home (which may moderate the need for hospice aide care) were not available for all those in our study and could not be included in analyses. Second, we could not assess whether other non-hospice related paid caregivers (e.g., home health aides, personal care attendants) were providing care in the home of hospice enrollees, though current evidence suggests that paid care at the end of life is minimal.³ Third, measures of function may not reflect acute functional declines as the end of life approaches; although the majority of included ADL data were collected in the calendar year of patient death (79.2%), we were unable to determine the exact date of ADL assessment in relation to patient death using available MCBS data. Fourth, our study includes only those who received routine, in-home hospice care at the end of life. Future work should examine receipt of hospice aide visits among nursing homes residents and if hospice aide visits are different among those who receive continuous, inpatient, or respite hospice care. Finally, we were limited to data contained within the MCBS and thus did not have data about patient and family preferences for hospice aide visits at the end of life. Additional work is needed to understand if and when patients and families opt to forgo hospice aide care; this may help elucidate potential barriers (e.g., family perception of hospice aide role) to greater hospice aide involvement in care.

Our study provides an important initial examination of how hospice aide care is currently delivered nationally to home-based hospice patients and families. Hospice aides are a common and consistent part of hospice care and can contribute significantly to the hospice interdisciplinary team. Greater support from hospice aides as death approaches has the potential to improve the care of both patients and family caregivers at the end of life.

Key Message:

In a nationally representative sample, 64% of decedents enrolled in home hospice received hospice aide visits. Visit frequency remained stable (average 1.3 visit/week) and was associated with community and hospice agency characteristics. Hospice aides should be better utilized to support patients and families at the end of life.